AVMs of the Cerebellum


AVMs of the Cerebellum


Members: 71
Latest Activity: Nov 13

Discussion Forum

Lump in throat?

Started by PKP. Last reply by Ann Ning Learning How Oct 2. 1 Reply

Does anyone else have a feeling that there is something stuck in their throat? I feel it sometimes, I thought it was allergies but remembered my doctor saying there was a link, between the AVM and my…Continue

Getting Groceries

Started by multistats. Last reply by Daniel Marcus Miles Sep 25. 11 Replies

When I was in the grocery store earlier today, I remembered the problems grocery stores provided. This problem was true of stores in general, but was particularly true of grocery stores. Those of us…Continue

Tags: grocery, stores, up, throwing, dizziness

still in coma

Started by ayshen Sep 7. 0 Replies

Hi, my 18th year old cousin had a AVM operation at left cerebral and shunt with coil are placed. Its been just over two months and she is still in coma. Is anyone have any idea if this is normal? as…Continue

dizzy and swollen

Started by Howard. Last reply by Boston Celtics Jun 17. 10 Replies

Hi, Howard here. I am now just about 6 months out from surgery. AVM repaired and Aneurism clipped. Both in my cerebellum. Still quite sick. Very dizzy most of the time which often leads to nausea and…Continue

Comment Wall


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Comment by Suzy E on September 12, 2014 at 7:35pm

Even though we all have had AVMs in our cerebellum, each case is different. While we can relay our experiences, the AVM doctor probably has the best answers to your questions. And I concur with Ann that while it may be a bit more work on your part, a 2nd, 3rd, even 4th opinion can't hurt when it comes to your health (and especially if you feel like you are "in the dark"). Best of luck to you. :)

Comment by PKP on September 11, 2014 at 7:53pm

atnt...thanks, I cant seem to get straight answers, I understand that my case was presented to the neuro/vascular "team'" so it was collective choice, but I feel so in the dark.... was hoping this venue would offer some perspective.

Comment by Ann Ning Learning How on September 11, 2014 at 7:46pm

Hi, PKP - sorry, no insight on what will happen since mine ruptured without me knowing I had one. Just wanted to say - how 'bout a 2nd or 3rd opinion? Or perhaps you could press your Hopkins docs for answers… bye, atnt.

Comment by PKP on September 11, 2014 at 7:42pm

I was diagnosed about a week ago. Was told by Johns Hopkins a few days after MRI, CT, and Angiogram that they would not treat it based on location and size. That treating it would cause more harm than good. I do not know much at this point... have headaches, poor balance on left side and facial twitching. What happens with this? Will this just get worse?

Comment by Lulu on August 11, 2014 at 9:54am

Thanks so much for your message and your very kind words Suzy E. I really appreciate your support and this site so much. I think you are abslutely right about the positive attitude. It really does help. I'm sure this has played a large part in getting me through life so far. It was a huge shock when I first found out that I had Hydrocephalus and an AVM. I don't hear of many people suffering from both conditions. I worry a lot about both of them and wish I could just press a button and have them gone. But I have also sort of accepted them as part of me. Even if my AVM was obliterated the drs aren't sure if the Hydrocephalus would go. So I may be stuck with it. I have loved hearing your story and positive outcome. With very best wishes.

Comment by Suzy E on August 8, 2014 at 6:17pm

Mollybaby's post back in March about her husband's personality brought back my fear of a personality change. Yes the experience can be horrible and lead to mood swings (but I hesitate to say I know everyone's experience). However, is my firm belief that one's personality is not changed, at least not in my journey. Yes, I had to learn how to walk again and how to do physical things that were always second nature prior to the surgery, but my personality remained (some would say that is not such a good thing...lol). Sometime after the surgery, I got my MBA and found supportive things (like giving back on this site) that I was good at and slowly left some of the physical things behind. My sense of humor remained, and who I was has always been there. That was all I cared about. Be kind to yourself, you are a survivor. I had to keep telling myself that and you should too. ::: getting down from my soapbox now :::

Comment by Suzy E on August 8, 2014 at 6:02pm

Thanks for your kind words Lulu. I was able to read through your profile and although my AVM was removed at the end of 2006, yours is still active. While I understand risky surgery (surgery is always a very personal decision and has so many factors to consider) and the hydrocephalus on top of it, it still must be very scary for you having the AVM there. Considering these circumstances, your positive attitude despite is commendable. These people on this site understand and applaud this (a positive attitude) and I sincerely believe has much to do with its success and growth. Long story much longer, you are awesome! Contact me anytime!

Comment by Lulu on August 7, 2014 at 3:41am

Hi Suzy E. Your positive attitude is just brilliant. AVM'ers can and do get through this and I really do think that maintaining a positive attitude is essential. My own AVM is unruptured and untreated. But every day I am thankful for what I have and I also aim to keep positive and look on the bright side of things. All the best to you.

Comment by Suzy E on August 6, 2014 at 11:53am

While my AVM did not rupture (thank goodness), the craniotomy (back at the end of 2006) had some long-standing effects and resulted in learning how to walk again, constant vomiting, etc. (running is out, so much for soccer). But fast forward to now, a sense of humor is a must. I am driving now (relax, its a four-wheeled vehicle, and accepting what I can no longer do and finding alternative things to take their place. While there is plenty bad that can be focused on in this AVM journey, the AVM itself has been a blessing. Let me try to explain. I have slowed down. I know who my true friends are and most importantly, the experience has given me the opportunity to look at things from a whole other perspective. This is where the sense of humor thing comes full circle. I believe your experience on this journey is your choice, and I choose humor. Much better than the alternative. Anyway, such is my intro. Stay as positive as you can everyone and try to fill in the gaps with laughter.

Comment by Julie on May 20, 2014 at 11:50am
BTW -thank you!

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